Tag: jpa

One month ago today, our family got packed up and headed home from St.Jude. We thought we were going home to LIVE. That Judah was only going to improve and that we would be back in a month for an MRI and to start Judah’s experimental MEK inhibitor treatment. But we were wrong.

When we came here on July 25th, we thought we’d be here for 3 days and stayed 10 weeks. We were wrong then too.

I am a hopeful person. I am optimistic. In fact, I would say I’m drawn to look for the positive in bad situations. I find myself saying, “well at least…” more often than, “of course…”. And I do not like situations where I can’t find the ‘good’ part.

So when Judah started getting minor headaches 3 weeks ago, I chose to look for a less tragic reason than the obvious one: that his tumor was growing again. Were we worried, of course. But we tried not to.

My philosophy is, worrying means you suffer twice. ~Newt Scamander

But after days of minor headaches, he got an terrible one. And it would not go away. We called his Drs at St Jude, who initiated a pain management protocol. We tried all the pain medicines, migraine medicines, fluids, steroids, and nothing touched his pain. After 48hrs, we were told to take him to ETCH for an MRI.

What we learned from that was that Judah’s brain swelling was out of control. On the MRI, we saw NO space. The swelling was pushing on his spinal cord, brain stem, cerebellum, and nerves. The only reason he didn’t have hydrocephalus was because he has a shunt. High dose steroids were administered and Dilaudid was given, which miraculously took his pain away with no other weird side effects!

Matthew was leaving 2 days later for a very important work trip. St Jude decided that since his pain was under control and the steroids were helping, we didn’t need to come right then. But they did want us back as soon as Matthew got home.

We adore his 2 Neuro Oncologists. But more importantly, we trust them. So with frightened hearts, Matthew left for Atlanta and I stayed home, praying nothing happened while he was gone.

And nothing did. And I praised Him for this small mercy. But I also cursed. I screamed and cried. I didn’t sleep. I was so very confused and angry. I still am.

Matthew’s work trip went better than he could have hoped for and he got home a day early, so we contacted Judah’s Drs and headed to Memphis for an undisclosed amount of time. Thankfully, the home we had used before was still open and the family graciously let us move back in.

Our first day back at St Jude, Judah had a St Jude MRI. We waited until the end of the day to find out the results. This time, as soon as the Dr walked in the room he told us the news, the steroids were working. The swelling was going down. This was encouraging. But Judah had been on steroids for too long already. We needed a new plan. And Judah’s team had 1!

Avastin, the chemo drug Judah had been on before we found out his tumor had transformed, is also used to reduce swelling. It does this by shrinking the vessels in the brain. The Drs tell us they want to start it immediately. When Judah heard, he started to cry. He wanted to go home. And amazingly, the Drs said that was just fine. St Jude is a magical place.

The next day Judah got his first dose of Avastin through his port. The only real concern was his blood pressure. Steroids + Vasoconstrictor = high blood pressure. And Judah’s didn’t disappoint. The next day his blood pressure was 127/91. They redid it. It went up. It was now time to speed taper off the steroids! If his blood pressure continued to stay high, he’d have to go on blood pressure medication. And God knows we don’t need anymore medicines in Judah’s daily regimen.The Drs said they were ok with us checking it and waiting to see how he did once we got him off the steroids.

At our next appt, I asked about the MEK inhibitor. The Drs said they would have it soon but Judah couldn’t start it yet.

WHAT?!?

I started to cry (just a little). I said, but you said it takes 3 months to start working. If we wait until Judah gets off the Avastin (end of December) the MEK won’t start working until March. And that’s the median range for when kids tumor start growing after radiation. They nodded. They knew my fears. They see if everyday.

For those of you with kids with cancer, you will understand the fierce desire to keep your kid on treatment. As long as they are on treatment, you are ‘fighting’. And I did not want to not fight. I told them so. His Drs were so patient. They explained that if Judah has a reaction to the MEK inhibitor, they won’t know if it’s a drug interaction with the Avastin, or the MEK inhibitor itself. And they will have to take him off of the MEK inhibitor. And we really need the MEK inhibitor.

I slouched. Defeated. The worries I try not to let in, crowded my mind. The ‘what ifs’.

While we waited to see how Judah would do tapering off the steroids, we celebrated Halloween at St Jude. Guys, it was more than I could have imagined. Every department dressed up in a theme. And when I say dressed up, these were professional costumes with fully decorated booths. The kids line up and walk (or roll) all over the hospital collecting mountains of candy. And every single one smiled. Magical.

Camilla Kate and Emmett Trick o’ Treated with Rere and Jim, Mikey, Mimi and Papaw. They had a blast.

We found out the next day that the Drs were ok with us going home. We could finish the Avastin at home. As long as all goes well.

And thus far, he has done well. He is off the steroids and has had a second dose of Avastin. His third dose is the Monday before Thanksgiving. He’ll get it every other week for at least 6 wks. And then, fingers crossed, we can start the MEK inhibitor.

Matthew and I are fighting fear with faith. We are surrounding ourselves with the love and support of our family, friends, and community. We are doing the best we can. Struggling. But making it.

There is a difference between pleasure and blessedness. Paul experienced imprisonment, pain, sacrifice, and suffering to their very limits, yet through it all he was blessed.

Dearest tested and tried believer, it is your mission to walk onto the stage of this world in order to reveal to all of heaven and earth that the music of life lies not in your circumstances or external things but in your own soul.

~Streams in the Desert, excerpts

This morning I woke feeling a sense of instability. Equal parts joy, weariness, and expectancy. Judah is low sick. And we got amazing news. If this cancer fight has taught me anything, it’s the beauty of balance. Balancing possibility and expectation. Faith and fear. Hope and suffering. Seeking and resting. And that necessary balance is impossible without Jesus.

Sunday Judah got a fever accompanied by a hateful cough and we had to take a trip to the Medicine Room at St. Jude. They agreed that he was wheezing a bit but felt comfortable sending us home after fluids and a prescription for a humidifier, rest, and lots of water.By Tuesday, the cold that sent me to bed for 3 days, feeling worse than I remember ever feeling, had taken up residence in my son’s chest.It almost delayed an exciting procedure where an ENT inflated Judah’s vocal cord to give him more support and strength. That, along with Botox injections into some of his salvitory glands to reduce secretions, hope to put an end to Judah’s micro aspirations and chronic cough. But through God’s great grace, the Nurse Practitioner and CNA saw my vulnerability and decided to go against protocol and give Judah 24hrs to sound better. And God parted the congestion, like He did for the Israelites with the Red Sea, just long enough for Judah to safely have his procedure. The congestion crashed back down on him, complete with wheezing and sinus headache. And even though Judah was sick, I praised God’s name because He blessed us.

For the last 3 weeks, I’ve woken with a different praise and worship song in my head, embedded and on repeat. Thursday I woke, dreading our long day at the hospital. I was also feeling a sadness because the day before I had finished a 40 day prayer plan that had become part of my day-to-day. It was integral in me finding my way back to the heart of Jesus. And the song Old for New by Bethel Music kept circling in my head, pushing the dread and sadness aside.

V1
What was torn you mend again
You redesign the tatter thread by thread
You take the broken and destroyed
You rebuild, You make whole
Chorus
Joy begins to rise
Hope begins to light the dark
Our God exchanges old for new
Dawn has conquered the night
Death has lost to life
V2
And now we are exchanging old for new
You turn flame into a fire
In you we walk in the impossible
We take Your love into the world
We let our light shine, we let it burn
Bridge
There’s nothing that Your love won’t do
There’s not a mountain with can’t move
There’s power in the blood
There’s power in the cross

I did as I always do, give in to the gift of a song for my day, and claim it.

And then when we got to Judah’s Neuro Oncology appointment and found out the genetic testing results were back.

For those who haven’t been following our journey, St. Jude sent a sample of Judah’s tumor to a lab to be genetic tested, broken down, to look for clues to a possible treatment option. Because in the last 9 months Judah’s tumor has shifted from a low grade Pilocytic Astrocytoma to High Grade Diffuse Intrinsic Midline Glioma, it’s terminal. Radiation has a lot of side effects and his tumor is chemo resistant. The genetic testing was our last ditch effort to find SOMETHING.

And it wasn’t until the Drs said the results were back that I realized I had hung my hope on what they were about to say. And they were smiling.

We already knew about the K27M mutation. It’s the murderer. The one no one knows how to stop. The P53 mutation is common in cancer and isn’t targetable. And then 2 variations of the NF-1 gene mutation. This is one the drs seemed excited about.

They explained that the NF-1 gene is like a controller for cell division. It’s job is to make sure that cell division stays balanced by turning on and off. When it mutates, it never turns off.

My eyes began to blur.

They continued. The NF-1 mutation is typically a “driver” in tumor growth. But it’s rarely found in High Grade tumors. It’s more often found in Low Grade tumors. So its possible that this mutation is what made Judah’s tumor shift from Low Grade to High Grade.

Now I’m holding my breath

Drs again. And we think we can use MEK Inhibitors to counteract the NF-1 mutation.

WHAT?!? (Internal dialogue: KIND OF BURIED THE LEAD! Are they saying they have a cure?)

Drs explain. This is ALL speculative. We do think MEK Inhibitors work to counteract the NF-1 mutation, but we do not know if the NF-1 mutation is what’s causing Judah’s tumor growth. And we won’t know until the growth halting effects of radiation wear off. In 3 months to a year we will either see tumor growth or we won’t. And there is literally NO clinical data to look to. Judah is 1 of 3 kids reported to have a shifted tumor kind with the presence of the K27M gene mutation in both tumor types. And the other 2 don’t have the NF-1 mutation, as far as we know. This is NEW territory for us. But when you brought Judah to St. Jude, we wanted to be able to give you guys hope. And this is hope!

So basically we are all stumbling around in the dark together but St.Jude and Jesus have resources like flashlights! I’ll take it. And praise God for His victory over my doubt.

Prayer is a funny thing. I’ve spent the last 8 weeks praying for healing. Praying for more time. Praying for acceptance. For daily joy. For closeness. I have been specific and general. And over time, my prayers have widened. I still pray for the same things but I have learned to pray God’s word. To pray to have his eyes and ears so I can see His hands and hear His encouragements. To pray that His will be done and mean it. To believe that God’s love for me is greater than my unbelief. His peace is greater than my fear. His strength, my only chance for strength. His word, truth.

I have told you these things, so that in Me you may have perfect peace. In the world you have tribulation and distress and suffering, but be courageous [be confident, be undaunted, be filled with joy]; I have overcome the world. [My conquest is accomplished, My victory abiding.] John 16:33 AMP

This verse thrown around a lot when people are suffering. I’ll be honest, when I see it, I usually roll my eyes. But today when it popped up in my quiet time, I wept. Because God can overcome our cynicism. 2 months ago, when a praise and worship song came on about God being a mountain mover, or how great His love is for us, or worse, how they’ll praise Him even though everything is falling apart, I would roll my eyes and change the station. I would say, what trials have these super famous worship bands been through? When did they have to choose to praise God as their heart broke in half? It Is Well my foot. They don’t know.

But now, I let loose my hands, close my eyes, and praise Him with the words inspired by God’s nature and goodness. Because recently I had an epiphany. Itdoesn’t matter if the writer or singer or friend has been broken and spilled out. What matters is that I believe the Holy Spirit inspires, moves and works in the lives of God’s people for His glory. I must give Him glory in the big and small. For the things I asked for and the things I didn’t.

We praise God that He is showing us His works in this new treatment option for Judah. We praise Him that our hope is stronger than our strife. We praise Him that He fights for our hearts. And if there comes a time when we can no longer see Him working, we will remember His truth, that he is still working.

Brooklyn, Brooklyn take me in.
Are you aware the shape I’m in?
My hands they shake my head it spins.
Ah Brooklyn, Brooklyn take me me in.
Dumbed down and numbed by time and age.
Your dreams they catch the world the cage.
The highway sets the traveler’s stage
All the exits look the same.

To be honest, I never got on the Avett Brothers train. I don’t NOT like them. Just never sought them out. So I have no idea what this song is supposed to be about. But as I was listening to a Prime Station, the above song came on. And some of the words struck a chord.

I wonder if Jesus sees the shape we are in down here?

When we got invited to St. Jude we were filled with a renewed hope. And then Friday happened. Judah had a MRI and the news was not what we were expecting. His new tumor is continuing to grow. It has taken up the entire 4th ventricle. The original mass from 5 years ago is also growing. Chemo isn’t working. The neuro oncologist didn’t know if surgery would be an option. Surgery? Biopsy? Radiation? Inhibitors? All were mentioned.

An appointment with a pediatric neuro surgeon was made. He told us that surgery wasn’t an option. That Judah’s tumor is diffusing and that makes differentiating between healthy brain tissue and excising tumor tissue impossible. He did say he wanted to do a biopsy. That a biopsy would allow St. Jude to sequence his tumor, look for markers and find a more targeted treatment. But what does no surgery mean? It means our options for treatment just got smaller. And the truth is, we never wanted Judah to have to go through surgery again because of how incredibly hard and heart wrenching it was to watch him relearn shaping and speaking his words, taking steps, concentrating on getting basic things down that no kid should have to do twice. But we would do surgery again if it meant he had to option to fight for ‘himself’ back.

Radiation oncology consult was yesterday. We went into that meeting feeling so vulnerable and frightened. Lack of factual information can do that to a person. What we had always heard was that because of where Judah’s tumor is (brain stem), radiation would be the last choice. That it was dangerous. That it could cause cognitive deficits. Physical deficits. New cancer later in life.

I wish I could say that all our fears were assuaged. They were not. If anything, the hypotheticals made sitting in this awful waiting cycle worse. Because now we know, if the biopsy comes back 1 way, those hypotheticals all of a sudden become reality. We are doing our best to set all the information we learned aside. Store it away with all the other information we have learned over the last 10 days. It will still be there when we need it.

Today we were admitted to Le Bonheur Children’s Hospital. Judah will have a CT scan and MRI for precision measuring to prepare for his biopsy surgery tomorrow. While we are here, the Tumor Board at St. Jude is happening. All of their best and brightest minds will be together to review Judah’s case to try to come up with the best course of action to stop Judah’s tumor from growing more.

The biopsy will happen tomorrow and is scheduled for 7:30 AM. We have been told that this is will not be traumatizing for him. That the surgery will take ~2 hours and that if all goes well, Judah will be off the vent and in his normal room right away. He will have normal recovery from anesthesia; groggy, grumpy, sore throat, and that his head will hurt. But it already hurts more than it should. The surgeon said he should wake up talking and walking etc. And that is such a relief to all of us! Before the biopsy, we decided it would be a good idea to cut Judah’s much loved long hair. Surgeons are not barbers. We know this from last time! Judah was very unhappy about having to have his hair cut off but we gave him the coolest hair cut we could think of, considering her had to have the whole back of his head shaved!

The biopsy results will take about a week. And Judah will be in the hospital for the same amount of time. We spend that time trying to be present and also distract ourselves. Food. Conversations. Movies. Switch playing. Snuggles. Kids being kids.

But we are going into this biopsy already wounded. We aren’t in the best shape…dumbed down and numbed. All the options in front us feel like bad ones. We covet prayers. Over the last 6 months, it has become immensely difficult to find words, any words, to pray. We cannot keep asking for God to show us He cares. Asking Him if He sees our suffering. Asking Him to give us a glimpse of His goodness. Because we’ve been begging. We believe that God is providing for us through our family and community. Moving their hearts to love us. Meals. Finances. Encouragement. And it has been more than we could ever say thank you for. Then we wake at 3AM to Judah screaming in pain. And we go to another Dr and they tell us more and more bad news. And then our 3 year old asks his big brother if he is better yet. Our 5 year old asks when we get to go home so she can see her friends and go to Kindergarten. It is all we can do to keep moving forward. We do our best. Smile and squeeze all our kids and say yes as often as is possible. And then hide when the wracking sobs come. The moment passes. We breathe. Matthew looks at me. There is an understanding and “here-ness” shared between us and we collect ourselves and start over. And I think it’s that “here-ness” that I miss from God. I used to feel His presence so keenly. I could feel his heart for me. For Judah. And could see His love for us in the little everyday things. Even when things were bad with Judah (or anything else), He was with me. But that’s gone. In it’s place is a wretched, broken, emptiness. A constant reminder of just how small and alone we are on this Earth. And I want so badly to keep believing that He isn’t finished with this story. That I can trust Him with my heart. With our son, his future, his life. It feels like too far to go. And it’s not because God hasn’t miraculously healed Judah, though that’s what we long for. It is because we feel abandoned and isolated from our Maker. And we don’t know why?

Where is the God who tells us he loves us and has plans for us? The Good Father, our creator. The mountain mover. The raiser of Lazarus. The silencer of storms. The healer of many.

We are pulling out of the driveway, headed to St. Jude for Judah’s patient evaluation. We will be there through Monday so we had to pack like we are going on a week long vacation.

Toys and books for the kids, books and technology for parents, clothes, sleep friends, toiletries, medicines, chargers, waters, snacks, wallets, phones, glasses, hair ties, swim stuff, and then all of Judah’s oncology stuff! And it it just a lot. Even with packing most of the stuff yesterday, we still ran around for 2 hours trying to check every box.

But we are on the way now. We are so very thankful. And also incredibly anxious. So many unknowns and hopes. St. Jude has pursued us over the last month. Seeking out all of Judah’s medical records from his various providers, connecting with us several times a week with questions and encouragement. They made it abundantly clear that they wanted Judah at St. Jude. That they had plans, ideas. That they were moving pieces to get Judah a spot.

Last Thursday, while I was enjoying a birthday evening at the Spa with my best friend, St. Jude called with 3 days of scheduled appts for Judah! I missed the call but surprisingly, the number in my ‘Missed Calls’ was a direct line. Matthew and I could hardly believe our luck. When we miss a call from any non-person, it is always a switchboard. I then spend 10 mins trying to ask for the right place/person, hold for awhile, and then leave a message, only to wait 8-24 hrs to hear back from a nurse. Not at St. Jude.

Today is New Patient Registration. Thursday will be a full day of Drs, consults, and labs. Friday is more consults and the MRI. We aren’t sure when or how we will get the results. We are planning to stay in Memphis over the weekend to spend time with my brother and his family. That way if St. Jude wants to see us Monday, we will be there.

We are in need of prayer and encouragement. We are not sure what St. Jude is going to want to do but we are assuming it will be different than Judah’s current course of treatment. And that is both exciting and scary. The last thing we want is to walk down the road we walked 5 yrs ago. Surgery. But we also want Judah to have the best quality of life. So we are praying that whatever course of treatment he ends up on, where ever he ends up being cared for, gives him just that. And that Matthew and I are able to hear, process, and make adequate decisions for Judah. That we will be strong enough to delay our immediate responses to think, pray, talk, gather information BEFORE making any decisions. That Judah’s tumor will be stable enough to allow us that time.

School is about to start. And it’s Cricket’s Kindergarten year. And I don’t want her to miss that with her friends. I don’t want Judah to miss 4th grade either!We don’t want to spend a long chunk of time away from Knoxville. Our friends, church, school. And we are struggling with the idea of moving Judah’s current care to somewhere other than Nashville. Really because the Kellett’s have been with us since day one 5 yrs ago. Caring, laughing, feeding, distracting us. Talking things out with us, pushing us individually and as a couple to be better. Being our inner circle and safe place to share or not; cry or not; be. And that’s not easy to give up.

But I’m borrowing troubles from tomorrow. We don’t not know what is in store for us. What we do know is that Judah is suffering and we need answers. We have given Vanderbilt and ETCH a shot and now we are trying something different.

We love receiving texts and emails from you guys. Encouragement helps so much. Thank you!

Some nights I go to bed with a gut feeling that something is going to be off in the night. Falling asleep becomes a trial and when, inevitably, the bad thing happens, I’ve had less sleep than I should have had. Matthew and I team up, doing what we each do best. We spend the early, early morning hours comforting and treating Judah, all 3 of us really longing for sleep. And then the bad passes and the 2 littles wake, and our “morning” starts. We spend the day trying to keep upright, all the while, dreading the repetitive nature of our new normal.

We are beyond tired. Beyond frustrated. Beyond sad.

We are in Nashville to try an find some answers. Judah has an appointment with the infectious disease Dr here at Vanderbilt. And he is getting a spinal tap to look for possible causes of the fevers. Judah has gotten 4 fever/headache episodes in 4 days. This morning, his fever was 104.6. This is exactly why we are wanting the spinal tap. But get this, the anesthesia Dr doesn’t want to do anesthesia on him because he had a fever in the last 24 hrs…even though the spinal tap is being done BECAUSE of the chronic fevers. It feels so ridiculous. Dr. Esbenshade wants it done and has plead his case to the anesthesia Dr.

We will see.

For now, we do what we have become really good at. We wait. Wait for Drs plans, for blood and urine tests to come back, forthe ok for the spinal tap, for any new clues, for the middle of the night and the next fever, for relief for Judah.

What comes to mind when you think 4th of July? Traditions? Places? People? Fireworks? BBQ? For us, that question is simple. It is the holiday weekend when everything we knew about anything changed. The weekend all the fun plans went out the window. The race we had planned to run as a family. The sibling time staying up late movie-watching. The lake time with Dad. The yard games. The food Mom would prepare for us. The weekend we learned who our people were. Who our God was. It was the weekend we learned that Judah had a brain tumor.

Tuesday, sitting on the porch at my parents home, looking at the lake, my older sister said, “5 yrs ago today”. That’s all she said. We all knew what she was referring to. Because for us, the 4th of July holiday is a harsh reminder that we are not in control and cancer is indiscriminate.

Judah got 2 fevers around the 4th weekend. He is getting chemo today. Needless to say, we didn’t need a reminder that Judah is battling brain cancer. And yet, Judah was present throughout our 3 days at my folks. He played the Ninentdo Switch with his cousins, teaching them to play his favorite game (Mario + Rabbids Kingdom Battle) and learning to play theirs (Fortnite). He watched Little Einstein’s (Pat Pat😂) with his Emmett and Stella. He came out for the fireworks, which he has never really done, and loved every second of the booms and lights.

As I watched on, in awe of this kid who has sensitivity to loud sounds and has an acute memory for negative experiences, and thanked God for him. For the warrior He made Judah from the beginning. For the memory, now burned into my memory,of my husband guarding and helping Judah assist him with fireworks. For my 4 oldest nephews who have never stopped stepping into the akward spaces with Judah to join him, encourage him, and accept him. For siblings who sit in the muck with us and play cards, cracking jokes, and lifting our collective spirits. For parents who help with it all without a smidge of martyrdom or jealousy.For the sunshine and water and great books. For our 2 beautiful younger kids who are navigating Judah’s cancer better than I ever imagined while unknowingly wrapping up my wounded guilty-mom-heart with their smiles and requests for stories and snuggles.

I have floundered the last 3 weeks. I have battled shame and disgust. I’ve been both bound up and emotional. I have been manic about tasks until I am no longer able to function and all the things fall to the wayside. My people love me anyway. But as I spin, my thoughts latch to the idea that I can wrest control from this cancer. And when I have enforced my control on all the moveable pieces in my world, making us all miserable, Judah still wakes in the middle of the night sick. His drs still don’t have answers. Matthew and I still have no peace or deep sleep. Because the idea of control is a lie. There is no control. There is only being confident in God’s faithfulness. And then moving, carrying all the swirling doubts if necessary, in the direction of the of the One who fights for us and goes before us. Every ‘yes’ and every step is progress.

The song giving me life this week is Oxygen by Stephany Gretzinger. A bit of it goes:

We got to Mom and Dad’s around 3:30 yesterday and played and swam (when it was raining 😏). The day and evening went as usual. The kids ate while playing video games and stayed up late just goofing off.
Fast forward to midnight when Judah comes into our room complaining of a headache. We got him in our bed, took his temp (normal), and propped him up hoping this was the worst of it.
At 4:30AM, I felt his belly and it was super hot. So we took his temperature – 102.8. We decided to wait 30 mins. If it went up, we’d call the on-call Dr. If it went down, we’d wait it out. 5:00AM rolled around d and his temp was up to 103.4. So I called the on-call Dr. He was so lovely. He didn’t know Judah or his history but he listened and was reasonable. I told him that they have always gone down by the time we get to the ER and that we are actually farther than normal for the holiday. Sonhe said, ok his counts are good, yes? I’m going to let you watch him. If it goes up, call me back and he has to go to the ER. If it goes down, you can stay home. I will let Dr Spiller know tomorrow.” And by 6:30AM it was normal.
We are tired again. And hoping this is not a foreshadowing of what this week will look like. Because this is how it startedast time we had 3 fevers in 4 days.
Prayers we get to enjoy our time here at Mumzy and Papa’s and Judah doesn’t get anymore fevers until chemo Thursday.

Last Thursday was a rough day. The fever at 5am. The ER visit. The CBC normal, again. But there was a change in our visit. Matthew requested a CT and the ER Dr agreed to do it! Fortunately/Unfortunately, it was normal too. The ER released us to Clinic for chemo. The Dr had results from all the tests she ordered, and again, they were mostly within normal ranges. His results did show there was inflammation somewhere. But no clue where.

We spent the weekend relaxing and resting. We played video games, watched movies, and enjoyed some much needed snuggle time! We also started the conversation with St. Jude. We gave the ok for them to request and receive all of Judah’s medical records. Vanderbilt sent records Tuesday (faxed and mailed). ETCH hasn’t sent anything yet, but our St. Jude coordinator assured us that they are the best at getting what they need. So we are leaving it to them!

And with that ball rolling, Vanderbilt is moving in the direction of more aggressive diagnosis and hopefully, in conjunction with St.Jude and ETCH, we will get to the bottom of what is causing Judah’s fevers and headaches. We are of the opinion that the more eyes and brains looking at Judah’s records, the better! And we are so lucky to have so many Drs that care. Sometimes, it just takes a fierce advocate to get everyone on the same page and Matthew and I are happy to be that if it means Judah gets what he needs. We will keep on them. We will not stop. It is our job to fight for those that can’t fight for themselves. In our case, it’s Judah.

Since the last post, Judah has been to the ER 2x’s and had fevers 4x’s. 2x’s we chose not to take him.

This morning, at 5am, when Judah came in with a headache and fever, Matthew and I discussed going or not going. We said, this is nothing new. And the ER would do nothing new. But we want an MRI or CT of his head while he has a fever. So we decided to go. I called the on-call oncologist and went through the same story I always tell. Because it’s always the same. I listened to his story (we just need to check his counts and make sure he’s safe) and tried not to interrupt him because I know this speech. It’s also always the same. When he told me we needed to take Judah to the ER, I asked him if he would order a CT or an MRI.

Dr: On Saturday. No probably not. If he is admitted, maybe.

Me: I know it’s super inconvenient that Judah always gets sick on the weekends and holidays. But he’s had these fevers and headaches for 2yrs and no one has done anything but blood work. If that’s all they are going to do, why should we go?

Dr: (say it with me) We need to make sure Judah is safe.

So Matthew is at the ER with Judah as I write this. And they are doing blood work.

I cannot speak for Matthew. I can say, for myself, I’m losing my faith. I feel it slipping. My hope trading for cynicism. I don’t believe in Judah’s Drs but I have said before that God can work through anyone. But He’s not. Judah is sick and he keeps getting sick and NO ONE WILL HELP HIM! Unless there is a Dr, like Phil Noe, the guy who found Judah’s tumor almost 6 yrs ago, that WANTS to figure this out, do different testing, while he’s running the fever, they won’t figure it out. They will keep pretending like they are keeping him safe when really they are playing it safe. Everyone thinks it’s the tumor. And they won’t look anywhere else. And maybe it is the tumor. Maybe it isn’t. But we won’t know if they won’t look at his head while he’s running a fever!

We are sad. We are angry. We are utterly exhausted. It sure would be nice if the Creator of the world, would give us just a little leg up. Until then, we are trying to figure out where to take Judah next. To find someone interested in the Judah puzzle.

Judah had surgery last wednesday and continue to be in serious pain until Tuesday, when he seemed to turn the corner. I think the healing and recovery was lengthened because he got chemo two days after surgery . It was 1 drug short of a complete regimen, but it still knocked him down pretty low.

With surgery and chemo recovery happening, we honestly could have “left” the training and learning how to use the g-tube. Needless to say, this house got little to no sleep.

But we are getting the hang of it. Judah’s taking in more feeds and Matthew and I are feeling more confident hooking him up, flushing, and clamping him!

He has color again. He has a bit of energy. He has a smile. And he is back to loudly narrating his game play. This weeks obsession, Mario + Rabbids Kindgom Battle. He’s been asking for it since he got his Switch from the Amazing Currans! I was hesitant to buy it for him because, honestly, it looked like he would get bored of it. It’s not a typical video game. Boy was I wrong. He LOVES it!

Current prayer needs:

1) that the dr at Vandy will call us with ideas on chemo

2) that the chemo can continue and be effect at killing the cancer not just stopping growth

We would love prayers for this weekend (really EVERY WEEKEND)

1) that Judah will stay fever free

2) that he will continue to feel better and better

3) that there will be NO reason to call the on-call Dr or go to the ER